[paulewattsParticipant]

Just wanted to raise this topic again. I’m amost 100 days post SCT and meds-free. After discussing it with my team I have been taking Curcumin tabs for the last 2 months (early days yet) but just wanted to know if anyone has a reliable supplier? Currently ordering online from Supplement Place.

Paul

[natdarke1Participant]

Hi Paul,

My mum has light chain MM and been on curcumin

For about 3 months now. We get it from Holland and Barrett

natalie

[paulewattsParticipant]

Thanks Natalie, will investigate although I’ve found you have to be careful when ordering. Some supply Turmeric with a small amount of curcumin and call it a compound under the guise of curcumin. Can be a bit of a minefield.

[susieParticipant]

Hi Paula

I was very interested in your post. I have been reading up as much as I can about curcumin and myeloma, having spoken to my consultant about my starting it when I’ve finished my next and final cycle.

I would appreciate info on what is the best dose. I have seen a post on m beacon that “doctor best” make is a good one. I don’t know if you’ve heard of it. It certainly is a minefield.

All good wishes

susie

[paulewattsParticipant]

Hi Susie,

In the interim following my earlier post I ordered my next supply from Doctor Best. Seems to be a reliable supplier and they’re upfront about the ingredients.
I don’t know what is the best dosage (does anyone?) but I started 2 months ago with 2 x 750mg capsules per day gradually increasing to 4.5mgs. Doctor Best come in 1000mg caps so I’ll probably increase to 6mgs daily but it’s very experimental and, of course, far to early to say if they’re having any beneficial effect.

Anyone else taking curcumin?

Paul

• This reply was modified 6 years, 1 month ago by  paulewatts.

[docmikeParticipant]

Dear Paul,
I am taking curcumin as I recover from my second asct .
My research lead me to an article on cucurmin absorption;Journal of the american college of nutrition vol34;4 p 347 to 358; Beyond Yellow Curry ;assessing commercial curcumin absorption technologies by BRad J Douglass & D L Cloutare.2015
The conclusion was that the hydrophilic carrier dispersed curcuminoids formulation gave the best absorption which i think is represented by the CurcuWIN trademark(Omniactives.com)
Which is found in Vibrant Health’s Maximized Turmeric 46x (maximum strength 500mg casules ) (also contains black pepper /bioperine to increase absortion) supplied by Water for Health !!!!!but previously by amazon ????.
In the bmj case report (Maggie LAI at myeloma uk was a co author )the dose which effected a five year remission in woman with advanced refractory myeloma was 8gm daily which i assume was the basic powder plus bioperine . I have guessed the dose equivalent as 2 capsules twice daily =2gm daily but it is only a guess because that s all I/we can do at this stage .
As always this issue will be a cause of continuing debate .
Best wishes

[jenny0Participant]

Dear Paul & everyone

I bought 120 tabs turmeric with bioperine (black pepper ) 95 % curcumin High potency   but each caplet is 500 mg from ‘just vitamins’ website £19.90 which I think is quite good value . As long as it’s 95% curcumin with black pepper to aid absorption , I think there are many suppliers out there.

I have bought these for my dad when he finishes his sct treatment .  I hope there is some truth in it all and all the best to you all .

 

[paulewattsParticipant]

Thanks for the info Jenny. I’ve been buying from Dr’s Best for some time now but looking at your suggestion (Just Vitamins) they’re a similar price but based in the UK. Dr’s Best are shipped from California and take around a month to arrive so I’ll be switching for my next supply. Thanks again for the recommendation. Currently taking 3 gms per day.

Paul

[jenny0Participant]

Your welcome Paul ,

Wish you all the best !

Have you had SCT ? If so can I ask how you found it ?

I am asking in regards to my dad you see , just diagnosed in January and hoping to get SCT . Just concerned it’s like equivilant to major  surgery to the body as a manner of speech !

Regards

jennifer

 

[paulewattsParticipant]

Hi Jenny, we’re always aware that everyone is different but I found the SCT nowhere near as bad as I thought it would be and certainly not akin to ‘major surgery on the body’ although I suppose in lots of ways that’s exactly what it is. My experience was that the actual process was not a problem at all, in fact I found it quite fascinating. It takes a while to recover from the one-hit chemo but apart from a few spells of short-lived nausea and tiredness it wasn’t too bad. Hope this helps xx

[jenny0Participant]

Hello Paul;

Thank you so much for your reply, it is definitely reassuring to a degree although I know everybody reacts differently but I’ve heard more positive outcomes on this site re STC and how it’s not as bad as one might anticipate . As long as the nurses and docs address any issues right away (which I’m sure they all do ) people get through it ok.  Im pleased for you it wasn’t too bad and im sure your still recovering . Let’s hope the curcumin helps to keep it all at bay for a long long time . Do keep me posted please. Xx

jen x

 

[susieParticipant]

Hi All,

I’ve started taking Curcumin today. I got them at “just vitamins” and hope they work, not only in the hope that it keeps my PP’s down at present levels, but also for my quite severe arthritis which has been very painful (spine) since I did some gardening. Most of my discs have gone together with vertebral slips almost cripples me at times. Dr’s don’t seem interested though.

While I’m here can I ask a question related to relapse. When other’s here relapsed did you get scans (MRI or CT) before you began treatment. When I asked about it I was told “no point you need treatment anyway”. My last CT was nearly 2 years ago since when I relapsed. I wonder if this was a cost cutting thing.

My Best Wishes

susie

[jenny0Participant]

Hello Paul and anyone else whose been through SCT

How are you doing ?

Can I ask , just before your SCT , how was your mobility and general well being ?

The team have put my dad forward for SCT as although 73 , he was previously a fit strong man with no other illnesses . At the mo 5 months post diagnosis and treatment , he can hardly walk , so so weak in his legs with extreme pain at night . Do you think they will still go ahead with sct if someone is already this weak and a shadow of their previous self ?

I feel you are prob a lot younger by the way you speak but was you quite well before the sct started?

Jennifer xx

 

[paulewattsParticipant]

Hi Jennifer,

I had about 3 weeks meds-free following 4 cycles of VDT and prior to SCT where I felt reasonably well and although I was very tired in the afternoons I managed short walks 3 mornings per week. I was then in hospital for 17 days for SCT and continued with short walks starting the first day after discharge. 5 months on, meds-free since discharge and I feel reasonably fit and my walks are now up to 7 miles. I also do yoga and use my exercise bike regularly but my knees particularly are usually quite stiff and I still get tired in the late afternoons but I’m determined to keep on trucking!

Does your dad manage to do any exercise? I find that if I just sit for any length of time muscles start to cease up. I don’t have any pain anywhere, anytime, just stiffness in legs and back,

Not sure if his condition will affect the decision to go ahead, my thought is that it won’t but I’m no expert of course. I had a cold the day I was admitted and they didn’t bat an eyelid! Anyway, I hope it goes ahead because I’m sure he’ll feel a lot better afterwards.

btw I’m 69, 68 at diagnosis July ‘17

Hope that helps

Paul xx

[jenny0Participant]

Dear Paul,

Thank you so much for that information , that really gives me a bit of hope for my dad and I will show him that.  7 miles a day is pretty impressive , my dad would never do yoga or can’t ride a bike sadly but there is always a gym eh and I was thinking about the cycle or even  the running machine for walking and holding onto the sides .  You must be so relieved to be over the treatment now so onwards and upwards for you and let’s hope the curcumin help keeps it all at bay for many years ! I’ll keep you posted re my dad .

Best wishes and thanks again

Jennifer x

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